My Crohn’s Story

Suspecting Something Is Wrong
Labor Day 2001 is a soiled part of my memory. It was when I got a cold. A cold? Big deal. Oh, but would that be the cold of my life. This cold turned into the breakdown of my body. The cold was my immune system yelling, “Hey, we’re about to do some crazy stuff to you. You ready?” I put up with the cold until the end of September when I suspected it was probably not normal to cough for three weeks. As a sophomore in college, I didn’t have my mom there to insist that I visit the doctor. I’m not even sure she knew anything was wrong. So I dragged myself in to the campus health center where they told me it was probably allergies. I took my prescription and left.

In October, when I finally visited home, my mom sent me to the family doctor, who gave me antibiotics, which was the first of hundreds of antibiotics I would chuck down over the next 10 years. The cough persisted. Then it became interesting. The night sweats began. The diarrhea (a word I still can’t spell without spell check) began. I attributed these to the antibiotics. The pounds started coming off. In fact, I was so skinny, I would steal my fraternity brother Nic’s clothes so that I would have something that fit. At the beginning of November, I asked to leave my shift at the campus newspaper so that I could visit the campus health center again. This time, I was the guinea pig. Because I exhibited symptoms of just about every terrible disease ever contracted by man, it was, of course, assumed that I had TB. The doctor (I assume he still has his credentials) drove me in his car (he didn’t want me infecting other students) to the local hospital, where they began running tests. After the 7th vial of blood drawn, I fainted in their office. Surprise: I was anemic.

All the blood tests came back negative, but I was sent home with more antibiotics. By the time December rolled around, I was down to 112 pounds (I started at 152). I trudged my way back to Independence, Mo., after finals and collapsed on my mom’s couch. When she walked in the door from work, she saw me in the living room with the lights off. She kissed me on the forehead, noticed the fever, noticed my dramatic weight loss and said, “Get in the car. We’re going to the emergency room.” Three days later, I was diagnosed with Crohn’s disease.

I had a fast recovery thanks to the corticosteriods and the anti-inflammatory pills. And things trucked along like that for a couple of years.

Surgery #1
On July 4, 2003, my dad had the family over for a shrimp feast. Minutes after dinner, I went to the bathroom and collapsed on the floor, my hands clutched to the upper part of my digestive tract. I felt like someone had stabbed me. It wasn’t until a month later when I found out it was my gall bladder that had burst inside of me. Over the course of that month, it had scarred itself to the surrounding tissue. What would normally be a simple laproscopic surgery, turned into just a bit more. The surgery was the first week of August. Days later, I was limping back into the newsroom at K-State’s daily newspaper as the new editor-in-chief where I had to lead the training for the 100+ staff members arriving from their summer vacations. My state of vulnerability was something I hated and wasn’t used to having to endure at 21 years old in front of my peers.

But the surgery seemed to do the trick for a while. And over the next several years, I would be in and out of remission and minor flare-ups.

2003 to 2010
I always felt relatively lucky when it came to Crohn’s. I thought I was beating it. I had cut back on my meds. I started taking natural supplements. I had scopes stuck up my you-know-what about once a year to check the innards. Sometimes I required a quick round of antibiotics or steroids. I gained 15 pounds. Lost 15 pounds. And that was life for the better part of that decade.

After almost two years free of prescription drugs, the Crohn’s started making an appearance. I had already begun seeing a naturopathic doctor who had given me supplements to maintain the integrity of my intestinal wall. I still take these supplements today. But they weren’t enough to fend off the torture-fest that would become the last 7 months of 2012. I began losing weight. In September, after excruciating pain of (get ready) an anal fissure. Those are two words you never want to see next to each other. I had heard stories of how Crohn’s could appear anywhere in the digestive tract, from the tongue down to where the sun almost shines. Since 2001, mine had been confined to a small portion of my terminal ileum (that part that connects the small intestines to the colon). My colon and rectal surgeon, though, assured me that the Crohn’s had indeed spread to that ever-so-sensitive and private part of my body. Not very convenient for people who like to, you know, sit. Or go to the bathroom. But there it was, a true pain in the butt. After too many embarrassing details to explain, I eventually became bed-ridden, unable to walk. And as if it were perfectly choreographed, the disease in my terminal ileum was becoming inflamed to the point that an intestinal blockage nearly cost me my battle with Crohn’s.

So my surgeon cut it out on New Year’s Eve, 2010. I have chronicled the 2010 journey here.

While I felt like a new man, and added 55 pounds back to my body, the Crohn’s in the anorectal (hate that word) area didn’t seem to want to fully recover. So I added Humira to my regiment. The biweekly injections in the leg became routine. Felt great and almost 100% if not for the pain in the rump. In 2012, I switched to Remicade, an infusion every 8 weeks that takes place over a couple of hours in the doctor’s office. It seems to be keeping the gut Crohn’s away. Still not 100% in the you-know-where.

And that’s where I am today. Yes, I deal with it every minute of the day. I think about every meal and its potential consequences. I think about where the bathrooms are when I’m away from home for more than a couple of hours. But I feel like I have my life back from Crohn’s and at least am in the driver’s seat, albeit sharing some of the wheel with it.

1 thought on “My Crohn’s Story”

  1. Ginna Terrill (friend of your father) said:

    I applaud your strength & courage. Your story brought tears to my eyes,yet hope in my heart,that YOU will,some day soon,live a better life,one without pain.
    I have a great friend who suffers with Crohn’s.She,too,almost suffers on a daily basis.She lives in Las Vegas,so I will forward on to her about your “Great Run”,in Dec. God bless you & may you finish your race,as you have won your “race” with Crohn’s.

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